Posts - CLL Support | HealthUnlocked

CLL Support

23,337 members•40,046 posts

All posts for August 2024

Some good news!

Yesterday at my Oncology visit my white count finally went DOWN! not getting too excited yet but a 10 point drop seemed to excite my doctor. She has also...

Yesterday at my Oncology visit my white count finally went DOWN! not getting too...

Tajie

•3 months ago

6 Replies

prebiotic collagen protein

Hi, I have searched the site re the above and most concerns relate to cost and getting collagen from diet rather than paying large sums for a packaged...

Hi, I have searched the site re the above and most concerns relate to c...

paulgf54

•3 months ago

11 Replies

Clinical trial using dandelion root for leukemia in Canada.

H.”ere is an article that some might be interested in: There are many more news articles about this. The research was done at University of Windsor in...

H.”ere is an article that some might be interested in: There are many more ...

montieth

•3 months ago

13 Replies

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Testing for Richter's?

Hi I have been on active monitoring for 4 years and have been told I am probably approaching treatment. I have a biopsy on Monday to check if it has become...

Hi I have been on active monitoring for 4 years and have been told I am probabl...

Janeerp

•3 months ago

5 Replies

Rash that won’t go away

I thought I’d share a picture of a rash that’s now over 2 months old that my CLL and GP doctors have no answer. They say it’s probably a reaction to the drugs....

I thought I’d share a picture of a rash that’s now over 2 months old that my CLL...

Louie_CC

•3 months ago

20 Replies

FDA Could Soon Limit Use of Only Drug for COVID Prevention - i.e.,Pemivibart may have reduced activity against growing variant KP.3.1.1

As an update to several earlier posts about the use of Pemivibart for COVID. It seems the FDA is about to limit its use to only as a pre-exposure prophylaxis...

As an update to several earlier posts about the use of Pemivibart for COVID. It ...

cujoe

•3 months ago

2 Replies

Perspective

Could someone give me insight on my numbers at time of diagnosis ALC 8.3 x 10(9) B cell 3% Kappa 93% lambda Positive cd 5 cd 19 cd20 Cd22 cd23 cd81 Negative...

Could someone give me insight on my numbers at time of diagnosis ALC 8.3 x 10(9)...

CountryHarbour

•3 months ago

13 Replies

Is high or low protein better for W&W?

Would love yall's thought on which better in W&W, high or low protein diet, if either. I am thinking about this because last week blood test shows me...

Would love yall's thought on which better in W&W, high or low protein diet, if e...

Vlaminck

•3 months ago

16 Replies

enlarged spleen

I had an ultrasound today to be told my spleen is quite enlarged. I had no idea the spleen works with the lymph nodes in the stomach and supports the...

I had an ultrasound today to be told my spleen is quite enlarged. I had no idea ...

BigBrownB

•3 months ago

17 Replies

Bedn in Zanubrutinib for about 7 weeks. On Sunday I started experiencing pain in my back, side and under the ribs. Same as before treatment

anyone else experienced this ? I hadn’t had an pain for the last few weeks…..

Nana1961

•3 months ago

6 Replies

Just diagnosed. Pretty confused

I was just diagnosed last week. Wbc of 14 and alc of 8.8 - no symptoms or lymphadenopathy. My tests were just completed and everything seemed very favorable...

I was just diagnosed last week. Wbc of 14 and alc of 8.8 - no symptoms or lymph...

goyo457

•3 months ago

19 Replies

co-payment and delivery questions

I’ve been on Calquence for several months now - all good there, but I struggle more with actually getting it delivered when scheduled and working with...

I’ve been on Calquence for several months now - all good there, but I struggle m...

LaneOShea

•3 months ago

12 Replies

paxlovid and Imbruvica

can others describe their protocol for interrupting their course of Imbruvica when taking Paxlovid? How much before did you stop taking Imbruvica and how long...

can others describe their protocol for interrupting their course of Imbruvica wh...

freddog

•3 months ago

6 Replies

Gout?

I have developed an incredibly painful big toe which is slightly swollen. It is isn't red or hot, so I don't think there is an infected joint. I am suspecting...

I have developed an incredibly painful big toe which is slightly swollen. It is ...

Eucalyptus22

•3 months ago

25 Replies

One month on brukinsa (Zanubrutinib) and my white blood count is still going up.

Latest number was 133, up from 122 a week ago. My oncology PA says this is normal and it may continue to go up for another couple of months or more! Has anyone...

Latest number was 133, up from 122 a week ago. My oncology PA says this is norma...

Tajie

•3 months ago

10 Replies

Obinatuz & Venetoclax

started Obinatuzamed infusions in June, added Venetoclax in July, and now at 400mg of Venetoclax. Noticeable side effects now that I’m on 400mg such as nausea...

started Obinatuzamed infusions in June, added Venetoclax in July, and now at 400...

Nbk59ct

•3 months ago

6 Replies

Acalabrutinib

I just started my treatment about a week and a half ago. So far doing great. Very minor diarrhea one day and several minor headaches. My question is about drug...

I just started my treatment about a week and a half ago. So far doing great. Ver...

1reb

•3 months ago

6 Replies

Covid

Did anyone else have diarrhoea,while taking paxlovid,no warning and very loose,sorry for being so expletive,it's so horrible l am thinking of stopping them.

Did anyone else have diarrhoea,while taking paxlovid,no warning and very loose,s...

sun_flower

•3 months ago

11 Replies

Unused CalQuence and Brukinsa scripts

I am looking to find a meaningful way for these drugs to benefit someone in need. I cannot tolerate either one due to serious side effects. I do not want tp...

I am looking to find a meaningful way for these drugs to benefit someone in need...

Cdub32

•3 months ago

11 Replies

Influenza A

I had Influenza A June 30 with symptoms resolution in 5-6 days with 10 d course of tamiflu Oddly, last week after starting to feel a lot better after Ven...

I had Influenza A June 30 with symptoms resolution in 5-6 days with 10 d course ...

skipro

•3 months ago

6 Replies

Ongoing rash with extreme itching for 3 months

Has anyone experienced rashes on upper back, chest, abdomen and legs and seen a dermatologist about it? Husband has had this ongoing for over 3 months now....

Has anyone experienced rashes on upper back, chest, abdomen and legs and seen a...

Palmetto

•3 months ago

20 Replies

Smudge cells

Is it better to have few or many smudge cells on the light microscopy test. My husband bounces back and forth between the two. Blood drawn every 3 months....

Is it better to have few or many smudge cells on the light microscopy test. My ...

Buffy-1

•3 months ago

5 Replies

Update.

Spoke with Dr Sidra my haematologist yesterday. My red cells are still being destroyed more rapidly than they are replenishing. He has reduced my Imber from...

Spoke with Dr Sidra my haematologist yesterday. My red cells are still being des...

Jacksc06

•3 months ago

28 Replies

6 weeks zanu

it’s been six weeks or so and in doing great! WBC is still pushing 300k …. Energy is at 90%. Occasional diarrhea , bruises and sores in mouth. All very...

it’s been six weeks or so and in doing great! WBC is still pushing 300k …. Ener...

Nana1961

•3 months ago

5 Replies

All lymph nodes are gone but WBC are very high.

Hi everyone I was diagnosed with CLL in September 2021 at age 43 with elevated white blood cells of 17000, and I was very stressed. I lost a lot of patience...

Hi everyone I was diagnosed with CLL in September 2021 at age 43 with elevated ...

Karate

•3 months ago

11 Replies

SARS-CoV-2 mRNA vaccination exposes progressive adaptive immune dysfunction in patients with chronic lymphocytic leukemia

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9810225/#:~:text=Multiple%20reports%20indicate%20diminished%20immune,na%C3%AFve%20patients%20remain%20largely%20unk

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9810225/#:~:text=Multiple%20reports...

zaax

•3 months ago

9 Replies

New COVID Available Next Week in US

https://www.cnbc.com/2024/08/22/covid-vaccines-fda-approves-pfizer-moderna-updated-kppoint2-shots.html

https://www.cnbc.com/2024/08/22/covid-vaccines-fda-approves-pfizer-moderna-updat...

PennyLane2024

•3 months ago

1 Reply

expired Ibrutinib

Hello. I’ve been on Ibrutinib 140mg/day since 2015. My health provider recently started only prescribing one month worth at a time instead of the usual three...

Hello. I’ve been on Ibrutinib 140mg/day since 2015. My health provider recently ...

Refuashleima

•3 months ago

7 Replies

Low neutrophils

Hey just got back latest blood work lymphocytes hasn't changed much but my neutrophils are pretty low ..is this common with CLL and what does it cause or mean...

Hey just got back latest blood work lymphocytes hasn't changed much but my neutr...

CountryHarbour

•3 months ago

5 Replies

CAR-T and IG weekly injections

I am nearly 9 years into CLL with TP53 deletion and unmutated IGHV. I am starting Breyanzi CAR-T therapy with lymphodepletion this week and CAR-T cell...

I am nearly 9 years into CLL with TP53 deletion and unmutated IGHV. I am start...

mnmnewtons

•3 months ago

2 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for August 2024

Some good news!

prebiotic collagen protein

Clinical trial using dandelion root for leukemia in Canada.

Testing for Richter's?

Rash that won’t go away

FDA Could Soon Limit Use of Only Drug for COVID Prevention - i.e.,Pemivibart may have reduced activity against growing variant KP.3.1.1

Perspective

Is high or low protein better for W&W?

enlarged spleen

Bedn in Zanubrutinib for about 7 weeks. On Sunday I started experiencing pain in my back, side and under the ribs. Same as before treatment

Just diagnosed. Pretty confused

co-payment and delivery questions

paxlovid and Imbruvica

Gout?

One month on brukinsa (Zanubrutinib) and my white blood count is still going up.

Obinatuz & Venetoclax

Acalabrutinib

Covid

Unused CalQuence and Brukinsa scripts

Influenza A

Ongoing rash with extreme itching for 3 months

Smudge cells

Update.

6 weeks zanu

All lymph nodes are gone but WBC are very high.

SARS-CoV-2 mRNA vaccination exposes progressive adaptive immune dysfunction in patients with chronic lymphocytic leukemia

New COVID Available Next Week in US

expired Ibrutinib

Low neutrophils

CAR-T and IG weekly injections

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